Putting patients at the centre of asthma management

Babs Verblackt, CNS Correspondent, Belgium For the past few years ‘You Can Control Your Asthma’ has been the recurrent theme of the annual World Asthma Day, celebrated annually on the 1st Tuesday of May. Though therapies are available, controlling their disease often remains a personal struggle for asthma patients worldwide. Their voices should be heard in any research and development of new ways to beat the chronic condition, feel international asthma organizations.
Many people with asthma still experience lots of symptoms which have a significant impact on their quality of life. “Asthma is a chronic disease and no cure has been found yet. People living with asthma have very sensitive muscles surrounding their airways. When their muscles get irritated, patients experience recurring coughing, breathlessness and wheezing, particularly at night or in the early morning”, says Isabel Proaño, Communications Manager at the European Federation of Allergy and Airways Diseases Patients’ Associations (EFA), a non-profit network of allergy, asthma and chronic obstructive pulmonary diseases (COPD) patients organisations, representing over 400,000 patients (www.efanet.org). “These symptoms pose a considerable burden in their lives, especially if they are uncontrolled, and can impact their family life, social activities and productivity at work.”

When a person with asthma comes into contact with something that irritates their airways (an asthma trigger), the muscles around the walls of the airways tighten and become narrower and the lining of the airways becomes inflamed and starts to swell. Sometimes, sticky mucus or phlegm builds up, which can further narrow the airways. These reactions cause the airways to become narrower and irritated – making it difficult to breath and leading to symptoms of asthma.

Severity varies

“The severity asthma has on people greatly varies from one individual to another and as a result of the context asthma patients live in”, Proaño told Citizen News Service. “There are many environmental determinants that patients cannot control individually, such as indoors and outdoors air quality, the existence of certain chemicals in building materials, or even the presence of tobacco smoke. For example, it has been found that asthma patients breathing second-hand smoke experience a significant reduction in their short-term response to asthma treatments.”

With many external factors possibly impacting the ability of a person to manage their asthma, new methods and technologies to individually control the disease remain valuable. One of the fields to be explored is mobile-health (m-health), or medicine and public health supported by mobile devices. “M-health has the potential to offer people tailored tools to better control and respond to their health needs. To date, there are many tools that patients can access to manage their asthma, but they might not fully respond to their needs, are not updated, or present data privacy concerns”, Proaño says. “We advocate towards public health authorities to provide citizens with a listing of safe and secure m-health applications.”

Input of patients needed

These m-health solutions - like any other solution - need to be developed with the input of patients themselves, EFA stresses. The organization continuously advocates for the inclusion of the patients’ perspective in projects funded by the European Institutions and for ensuring that patient needs and expectations are the target for research. “Close collaboration between patients, healthcare professionals and researchers who work to find solutions for patients is essential to producing meaningful research outcomes”, Proaño stresses. “Patients’ involvement throughout the whole research cycle, from the setting of the research agenda to the final use and evaluation of the findings does add value and ensures impactful results.”

One of the new projects EFA is involved in is ‘myAirCoach’ (www.myaircoach.eu), a pan-European project funded by the European Union to develop a monitoring device which is integrated with mobile technology to help people with asthma to take the right steps to stay on top of their condition and reduce their risk of an asthma attack. The tool will use a network of sensors to collect data about a person’s symptoms, inflammation inside the airways and the environment.

The data will be transferred to a mobile device for analysis and will feed into a personalized digital model of each individual’s asthma, supporting both patients and healthcare professionals to self-manage asthma and optimize treatment. Patient representatives from EFA and Asthma UK will inform the design of myAirCoach through focus groups and surveys to make sure it is useful to patients in the real world.

“Thanks to m-health, asthma patients will have the possibility to monitor and control their asthma every time, everywhere, and this will enable a real personalization of their treatment”, Proaño elaborates. “What is more, the interaction between patients and doctor will be more accurate and patient-centered, because the device will also measure the external factors affecting the individual.”

Time to take action

Other organizations, such as the Global Asthma Network (www.globalasthmanetwork.org), also underline the need to involve communities and patients in the fight against asthma. The Global Asthma Report 2014 (www.globalasthmareport.org) stresses that ‘the involvement of the non-governmental patient organizations, which are aware of the grass-root problems’ is ‘especially important’. The report sets out specific actions the World Health Organization (WHO), governments, health authorities, communities and health care workers need to undertake to reduce the burden of asthma. “Even one preventable asthma death is a tragedy”, says Professor Innes Asher, Chair of the Global Asthma Network. “In every country measures can be taken to improve asthma”.

World Asthma Day is an annual event organized by the Global Initiative for Asthma (GINA) (www.ginasthma.org) to improve asthma awareness and care around the world. It takes place every first Tuesday in May, which this year was May 5. Globally, it is estimated that around 300 million are living with asthma and nearly 250,000 are said to die prematurely every year from the condition.